Blake started off his Monday with a VERY happy reunion with his awesome friends at preschool! He went with me to drop off Aidan and Riley so he came into his class to say hi! He received the most warm welcome anyone could imagine from his amazing teachers, his favorite friends and the awesome moms of all those friends. Although he was quiet, he had a big smile and I think it filled him up.
From there we headed to his cardiology follow-up and Blake got a great report. He continues to heal well and move along with Superman like strength. Our doctor said that Blake's heart looked "remarkable" and that it looked like a different heart. Thankfully, Blake's lungs have stayed clear of any fluids so he was able to cut his remaining diuretics (Lasix and another drug meant to hold the potassium that he looses on the Lasix) in half. Blake also came home on an aspirin and that was stopped. The best news on the medicine front is that we have stopped the Amiodarone....this was the drug I mentioned earlier that he has been on for over 1.5 years that has bad long term effects (thyroid damage, glaucoma, etc).
There is one small concern regarding Blake's heart rate which has been abnormally high since last Sunday. A normal heart rate for a 3 year old is around 95 but Blake is around 130 and when he sleeps he is only getting down to 120 when he should get down to his pacemaker which is set at 100. There are a here are a few things it could be...his EAT (irregular heartbeat which landed him on the Amiodarone) is coming back or there is an issue with the heart function but it is more likely that his heart is just having to work hard because his left ventricle is enlarged and stiff. Blake does not seem bothered and everything else looks so great that we are hoping/assuming it is the later. He will go on a 24 hour heart monitor after another follow-up on Monday to confirm that.
Things are settling down at home and we are getting back into our routine. I am still trying to get through stacks of mail and catch up on email and texts. I also just realized today that Mother's Day was Sunday....I had put it out of my head that we would be anywhere but the hospital in Boston. I am feeling very blessed to be spending it at home with my whole family!
We continue to be overwhelmed by the love, support and prayers for our family. Thank you!
Monday, May 6, 2013
Saturday, May 4, 2013
Normal Saturday
Today is the first day things have felt back to "normal" in our house. Blake is feeling much better and is freely moving around the house which means he is able to be on the floor playing with Aidan! He is up to taking 3 walks to the mailbox each day and although he gets tired he is tolerating movement much better. Blake has never been more ready for nap each day and is nearly asleep before I leave the room.
Aidan and Riley seem to be feeling settled with everyone home and back into our routine. Riley hasn't wanted to leave my side but this morning was excited to head to the grocery with Tom. Right now it is about conquering the little things!
We are excited to get to his follow up appointments Monday and Tuesday to ensure he is on the right path to full recovery. He is really anxious to get back to preschool to see his friends so we hope to get an idea of when that can happen. For now we are enjoying our "normal" sunny Saturday morning!
Wednesday, May 1, 2013
Getting Stronger
For the few days that we have been home we have been giving lots of kisses and hugs and working to ensure Blake is comfortable. Although he has gained so much strength in such a short time and has worked up to walking to the mailbox and back, he still needs support moving around and getting on and off furniture. It is remarkable how much he gets better every day.
We were able to give him a bath and try to get off some of the many strips of sticky tape left on his sensitive skin. When we took his last large bandage off (from where his pic line was) he announced "I am not connected to anything else".
We have follow up appointments with his cardiologist and pediatrician early next week. We look forward to sharing how well Blake has done with the team that has taken such good care of him for 3+ years.
I feel a little like a pharmacist each morning and evening but once he is able to come off the Lasix and we aren't worried about his Potassium it will be much easier. He went into surgery on one medicine that we had hoped he would not come back on (it has long term side effects we don't want to expose Blake to) but unfortunately for now he is. Our goal is to work with the team here to get him off that medicine soon.
We feel blessed and overwhelmed with how smoothly Blake's surgery and recovery went. We now have to focus on getting his body well and helping him (and Aidan and Riley) recover emotionally and ensure he understands (as much as a 3 year old can) everything that he went through. Please pray that our happy boy continues with his Superman strength!
We were able to give him a bath and try to get off some of the many strips of sticky tape left on his sensitive skin. When we took his last large bandage off (from where his pic line was) he announced "I am not connected to anything else".
We have follow up appointments with his cardiologist and pediatrician early next week. We look forward to sharing how well Blake has done with the team that has taken such good care of him for 3+ years.
I feel a little like a pharmacist each morning and evening but once he is able to come off the Lasix and we aren't worried about his Potassium it will be much easier. He went into surgery on one medicine that we had hoped he would not come back on (it has long term side effects we don't want to expose Blake to) but unfortunately for now he is. Our goal is to work with the team here to get him off that medicine soon.
We feel blessed and overwhelmed with how smoothly Blake's surgery and recovery went. We now have to focus on getting his body well and helping him (and Aidan and Riley) recover emotionally and ensure he understands (as much as a 3 year old can) everything that he went through. Please pray that our happy boy continues with his Superman strength!
Sunday, April 28, 2013
Heading Home
I can't really believe it but we are packing up to take Superman Blakey Bear home! They are writing discharge papers and getting prescriptions ready! Aidan and Riley thought they were coming for a visit but turns out they were coming to bring him home! Once we get home and settled I will update everyone here on how he is doing. Please pray that we get everyone safely home and that Blake does as well at home as he has done at the hospital. Our experience at Boston Children's Hospital has been amazing and we are very thankful to each doctor and nurse that helped Blake during our time here!
Happy to be headed home!
Saturday, April 27, 2013
Almost There
It is am amazing to see how well Blake is healing. His stomach issues seem to be completely resolved and he is happily back to eating three meals a day. It seems like torture giving Blake the potassium supplements that he needs because he anticipates how horrible it tastes and makes his stomach feel so he cries at the site of it. Good news though, his levels are back up enough today that he no longer has to take the supplements but has been able to be moved to a medicine that maintains his levels as long as he is on Lasix.
Overall Blake is gaining more strength each day and was able to take a walk down the hallway and back today. He is able to stand at his bedside and do crafts or play with toys. He loves to take rides on his car to visit the fish and outside to the garden.
We received the results of the echo yesterday evening and it all looked great. Blake has a repaired heart with four working chambers!!! He has a small amount of mitral valve regurgitation (when the mitral valve doesn't close all the way and some blood can go back into the heart) but if they need to do something about that it will be will into the future. Between that, his pace maker and his homograft (it was used to close the large hole in Blake's heart) he will have basically maintenance surgeries through his lifetime but for now we just get to enjoy watching him run around with pink lips and amounts of energy he has never experienced!
As long as tomorrow's blood work comes back as good as it has looked today, we will talk about going home by early in the week! We were prepared to be here for much longer so it feels like such a treat to think of taking Blake home and letting him get strong!
Blake has a message for everyone today:
Overall Blake is gaining more strength each day and was able to take a walk down the hallway and back today. He is able to stand at his bedside and do crafts or play with toys. He loves to take rides on his car to visit the fish and outside to the garden.
We received the results of the echo yesterday evening and it all looked great. Blake has a repaired heart with four working chambers!!! He has a small amount of mitral valve regurgitation (when the mitral valve doesn't close all the way and some blood can go back into the heart) but if they need to do something about that it will be will into the future. Between that, his pace maker and his homograft (it was used to close the large hole in Blake's heart) he will have basically maintenance surgeries through his lifetime but for now we just get to enjoy watching him run around with pink lips and amounts of energy he has never experienced!
As long as tomorrow's blood work comes back as good as it has looked today, we will talk about going home by early in the week! We were prepared to be here for much longer so it feels like such a treat to think of taking Blake home and letting him get strong!
Blake has a message for everyone today:
Can you believe that smile!
Friday, April 26, 2013
Joyful Reunion
There aren't really the right words to describe the reunion that happened yesterday but it was a joyful thing to watch. Blake was sleeping when Aidan and Riley arrived yesterday and when he heard their voices he immediately began to smile from ear to ear and wave his arms and legs. It was more movement than Blake had done since his surgery and he hadn't even opened his eyes. The whole experience was the definition of happiness. There was lots of hugs, kisses, high fives and stories to share and I think it was just the medicine that Blake needed.
Blake's stomach issues seem to be much better. He is able to eat a little more and although he really doesn't like them, they have been able to move most of his medicines from IV to oral which is a big step toward going home. He is also up and moving around and we even took him on a little trip outside to the garden yesterday afternoon. We are trying to get him to sit up and move around as much as he can.
It is hard to believe we are thinking about when we will be headed home. Just 5 days ago we were hoping he would come off the ventilator and now we are going through all the steps to allow his body to recover so we can take our little Superman home! Today he had an echo of his heart which took nearly 2 hours. The results of that echo will tell the docs how his heart is functioning and ensure he needs no additional revisions.
When you go through something like this and are in the type of hospital that we are in it is very easy to look around and see the pain that so many children and their families are going through. Through this experience though it has been very easy to also see the kindness of people. This blog has had a few thousand views by people who all genuinely care how Blake is doing! We have received countless emails, texts and cards with well wishes for Blake and offers of help and support for our family. Blake has received so many thoughtful gifts and gestures to make this all a little easier for him. We have even had strangers who know about our kids send gifts and thoughts of prayer. Thank you all so much for the continued love, prayers and support!
Blake's stomach issues seem to be much better. He is able to eat a little more and although he really doesn't like them, they have been able to move most of his medicines from IV to oral which is a big step toward going home. He is also up and moving around and we even took him on a little trip outside to the garden yesterday afternoon. We are trying to get him to sit up and move around as much as he can.
It is hard to believe we are thinking about when we will be headed home. Just 5 days ago we were hoping he would come off the ventilator and now we are going through all the steps to allow his body to recover so we can take our little Superman home! Today he had an echo of his heart which took nearly 2 hours. The results of that echo will tell the docs how his heart is functioning and ensure he needs no additional revisions.
When you go through something like this and are in the type of hospital that we are in it is very easy to look around and see the pain that so many children and their families are going through. Through this experience though it has been very easy to also see the kindness of people. This blog has had a few thousand views by people who all genuinely care how Blake is doing! We have received countless emails, texts and cards with well wishes for Blake and offers of help and support for our family. Blake has received so many thoughtful gifts and gestures to make this all a little easier for him. We have even had strangers who know about our kids send gifts and thoughts of prayer. Thank you all so much for the continued love, prayers and support!
Thursday, April 25, 2013
Transition day
We have officially moved from the CICU to the floor. Blake's heart function looks good and now the goal is to really ensure everything is good with his pacemaker and that the rest of his body can fully recover.
Since about 4am this morning Blake has been feeling pretty rough. They are still trying to keep Blake dry to ensure that his lungs stay clear. However, being dry in combination with everything else his stomach has been through has caused him to vomit throughout the morning. Unfortunately his potassium is low because they are keeping him dehydrated and the potassium replacement causes nausea. They are continuing to give him pain medicines and anti-nausea medications.
He did get to leave his room today in a green car (ride on toy) to head down for a chest x-ray. We took advantage and took him down to the lobby to check out the fish tanks while we were out...that made him really happy. He did well but it is hard to see him struggle as he regains his strength. It was the first time he had been unsupported and he is having a little trouble controlling his neck. The goal is to get him up and try to move every 30 minutes as he can tolerate it. We hope that if he can move it will help his system move and give him relief from the nausea without adding another medication. I know over the next few days he is going to need a little push but then I remember he had two heart surgeries over the last 10 days and I just want to hold him!
We are counting down until Aidan and Riley get here today! We are hoping to take them on a walk to the garden later this afternoon and let Blake go outside for the first time.
Since about 4am this morning Blake has been feeling pretty rough. They are still trying to keep Blake dry to ensure that his lungs stay clear. However, being dry in combination with everything else his stomach has been through has caused him to vomit throughout the morning. Unfortunately his potassium is low because they are keeping him dehydrated and the potassium replacement causes nausea. They are continuing to give him pain medicines and anti-nausea medications.
He did get to leave his room today in a green car (ride on toy) to head down for a chest x-ray. We took advantage and took him down to the lobby to check out the fish tanks while we were out...that made him really happy. He did well but it is hard to see him struggle as he regains his strength. It was the first time he had been unsupported and he is having a little trouble controlling his neck. The goal is to get him up and try to move every 30 minutes as he can tolerate it. We hope that if he can move it will help his system move and give him relief from the nausea without adding another medication. I know over the next few days he is going to need a little push but then I remember he had two heart surgeries over the last 10 days and I just want to hold him!
We are counting down until Aidan and Riley get here today! We are hoping to take them on a walk to the garden later this afternoon and let Blake go outside for the first time.
Wednesday, April 24, 2013
Up and Moving
Wow...what a difference a day can make! Blake is sitting in a chair next to me as I write this.
Last night they were able to remove his arterial line (it was monitoring his blood pressure) which he was really happy about because while he had it on he had to have an arm board. His temperature was a bit elevated again last night but everyone has agreed that is Blake's reaction to stress and was caused due to the surgery yesterday.
This morning they were also able to remove his GI tube and he has been drinking water and a bit of a milk shake. They let him try to eat breakfast but after only two few bites he vomited so we are sticking to milk shakes and smoothies for now.
A little while ago he was able to sit up and we slid him out of the bed. He took a few steps to a chair and is now happily perched on some pillows. He has a lot of discomfort in his belly due to stomach irritation from all the meds, he has two places where he had the chest tubes and they had to make space for his pace maker. They are continuing to work on the right type and amount of pain meds to make him as comfortable as possible.
We are still in CICU for now as his first x-ray this morning did show that his lungs were a little "wet". He is back on a good bit of diuretics today to try to reduce that...we are also hoping that if he can move around he will cough and move some of the fluid himself. Kids who have the bi-ventricular repair are at a high risk for fluid on the lungs and other respiratory issues so they want to continue to monitor this before releasing him to the floor.
We are SUPER excited that Aunt Sheila is going to be bringing Aidan and Riley up tomorrow for a visit! Please pray they have safe travels. Please pray that Blake gains some strength and that his lungs get clear and dry. Thank you for your continued love, support and prayers for our family! I am so proud of how all the kids have handled this!!!
Last night they were able to remove his arterial line (it was monitoring his blood pressure) which he was really happy about because while he had it on he had to have an arm board. His temperature was a bit elevated again last night but everyone has agreed that is Blake's reaction to stress and was caused due to the surgery yesterday.
This morning they were also able to remove his GI tube and he has been drinking water and a bit of a milk shake. They let him try to eat breakfast but after only two few bites he vomited so we are sticking to milk shakes and smoothies for now.
A little while ago he was able to sit up and we slid him out of the bed. He took a few steps to a chair and is now happily perched on some pillows. He has a lot of discomfort in his belly due to stomach irritation from all the meds, he has two places where he had the chest tubes and they had to make space for his pace maker. They are continuing to work on the right type and amount of pain meds to make him as comfortable as possible.
We are still in CICU for now as his first x-ray this morning did show that his lungs were a little "wet". He is back on a good bit of diuretics today to try to reduce that...we are also hoping that if he can move around he will cough and move some of the fluid himself. Kids who have the bi-ventricular repair are at a high risk for fluid on the lungs and other respiratory issues so they want to continue to monitor this before releasing him to the floor.
We are SUPER excited that Aunt Sheila is going to be bringing Aidan and Riley up tomorrow for a visit! Please pray they have safe travels. Please pray that Blake gains some strength and that his lungs get clear and dry. Thank you for your continued love, support and prayers for our family! I am so proud of how all the kids have handled this!!!
Tuesday, April 23, 2013
2nd Surgery Complete
We are one big step forward in bringing this brave, amazing, happy little boy home with a repaired heart. This morning at about 8:30 they took Blake back to the operating room where he had his pace maker placed. He did great...this surgery was a sneeze compared to what he went through last week.
He came back around 12noon and after a quick echo of his heart we were able to be with him. Although sleepy, he was happy to be back. We were pleasantly surprised that he came back with no ventilator (the one they placed for his surgery they were able to take right back out because he did so well) and no chest tubes. He has been a little sick to his stomach and expressed a little discomfort but they are quick to do everything they can to make him comfortable.
His pace maker is set to 120-180 beats per minute but around 1:00 it started doing something funny and his heart rate was dropping to 106-115 which shouldn't happen. The EP doctors (also known as the pace maker dudes) quickly came and made some small adjustments to the software in his pace maker. They told us that it is a fairly common problem and they are going to check the pace maker again tomorrow and then once again before they let him go home. Checking the pace maker is completely painless for Blake....they essentially put something the size of a computer mouse on his chest which allows their computer to speak to his pace maker.
After 8 days in the Cardiac Intensive Care Unit there is talk of moving us down to the floor tomorrow. Although that is such a good sign of how well he is doing it is honestly a bit scary. The nursing here is one-to-one and Blake's room now is right across from the central monitoring area where the doctors spend much of their time. I trust that he is doing really well but there is a comfort level with the care we have right here. It might be a bit of emotional attachment as well....you spend 12 hours with each of the nurses but the days seem so long that it feels like they are old friends. We have been blessed with the opportunity to come to Boston and have this repair done for Blake and blessed with the care that he has received.
He came back around 12noon and after a quick echo of his heart we were able to be with him. Although sleepy, he was happy to be back. We were pleasantly surprised that he came back with no ventilator (the one they placed for his surgery they were able to take right back out because he did so well) and no chest tubes. He has been a little sick to his stomach and expressed a little discomfort but they are quick to do everything they can to make him comfortable.
His pace maker is set to 120-180 beats per minute but around 1:00 it started doing something funny and his heart rate was dropping to 106-115 which shouldn't happen. The EP doctors (also known as the pace maker dudes) quickly came and made some small adjustments to the software in his pace maker. They told us that it is a fairly common problem and they are going to check the pace maker again tomorrow and then once again before they let him go home. Checking the pace maker is completely painless for Blake....they essentially put something the size of a computer mouse on his chest which allows their computer to speak to his pace maker.
After 8 days in the Cardiac Intensive Care Unit there is talk of moving us down to the floor tomorrow. Although that is such a good sign of how well he is doing it is honestly a bit scary. The nursing here is one-to-one and Blake's room now is right across from the central monitoring area where the doctors spend much of their time. I trust that he is doing really well but there is a comfort level with the care we have right here. It might be a bit of emotional attachment as well....you spend 12 hours with each of the nurses but the days seem so long that it feels like they are old friends. We have been blessed with the opportunity to come to Boston and have this repair done for Blake and blessed with the care that he has received.
Monday, April 22, 2013
Finding His Voice
The days seem long and our goals for Blake and his path seem to change slightly with each rounding by the doctors. When I look through each blog post it feels like we have said his ventilator has been coming off all week. But it DID come out today!
The research tells Blake's team of doctors that if conduction in the heart does not come back on its own within 7 days there is a 99% chance it is not going to come back. Although there has been some promising signals his heart is just not doing any conduction. Tomorrow morning Blake will go back into the operating room and have a pace maker placed. We are still overwhelmed with how well he is doing as are each of the doctors and nurses. They will go into the same incision and place the pace maker under his ribs and he will be briefly placed back on the ventilator. If all goes well the ventilator should be removed immediately after surgery. We aren't looking at this as a set back but rather as another marker in the path towards Blake's ultimate recovery.
To be honest this morning was rough for Blake. He slowly woke up over night but this morning he (and his stomach) woke up with a bang. Because he was moving more, he was coughing more and the ventilator sits right at the gag reflex so he spent a large part of the morning getting sick which made him very uncomfortable. Although he is going back into the OR tomorrow they went ahead and removed the ventilator because it was causing him such discomfort. We were very thankful for that decision. Once the ventilator came out he was able to sit up and has been wide eyed. He has tried to say a few words but is still finding his voice again.
Right now he is resting comfortably with his favorite blanket from home and the giant teddy bear that his Daddy got for him. The rest of the day will be spent resting, recovering and preparing to go back into surgery tomorrow.
The research tells Blake's team of doctors that if conduction in the heart does not come back on its own within 7 days there is a 99% chance it is not going to come back. Although there has been some promising signals his heart is just not doing any conduction. Tomorrow morning Blake will go back into the operating room and have a pace maker placed. We are still overwhelmed with how well he is doing as are each of the doctors and nurses. They will go into the same incision and place the pace maker under his ribs and he will be briefly placed back on the ventilator. If all goes well the ventilator should be removed immediately after surgery. We aren't looking at this as a set back but rather as another marker in the path towards Blake's ultimate recovery.
To be honest this morning was rough for Blake. He slowly woke up over night but this morning he (and his stomach) woke up with a bang. Because he was moving more, he was coughing more and the ventilator sits right at the gag reflex so he spent a large part of the morning getting sick which made him very uncomfortable. Although he is going back into the OR tomorrow they went ahead and removed the ventilator because it was causing him such discomfort. We were very thankful for that decision. Once the ventilator came out he was able to sit up and has been wide eyed. He has tried to say a few words but is still finding his voice again.
Right now he is resting comfortably with his favorite blanket from home and the giant teddy bear that his Daddy got for him. The rest of the day will be spent resting, recovering and preparing to go back into surgery tomorrow.
Sunday, April 21, 2013
Sneak Peak
Not much has changed today as they are letting Blake wake up from the sedation and weaning off more meds. He is opening his eyes, responding to lots of questions and listened to a few books read to him.
As Blake wakes up, feel free to leave comments here and we will be sure to share everything with him! Thank you for the continued love, support and prayers. Tomorrow is going to be a big day as they are definitely going to remove his ventilator and he will be fully awake!
Hope
Things are calm today in Boston but in Blake's room they are moving! Blake is really amazing and we are so proud and in awe of how well he has done.
He still has his chest tubes in because once they removed his LA line there was some bleeding and additional drainage. It looks like those will come out tomorrow. He was able to "sprint" on the ventilator for two hours last night. Sprinting means they turn down the pressure that forces him to breathe but push in CO2 so his brain knows to take breaths and he did great. There was a decision made today to leave his ventilator in until tomorrow to ensure all the fluid is off his lungs and chest and to avoid an additional step down. The goal would be tomorrow he would be able to breath fully on his own. We do see him taking some breaths on his own above the ventilator now. Please pray this delicate process goes smoothly for him as it is a leap forward.
They are moving him from Pediatlyte to Pediasure so he is getting more calories and more nutrition. They are also going to start to remove him from the Morphine and lighten his sedation as they move towards removing his ventilator. He is moving more and is responsive with head nods when you ask him some questions. They describe that he is basically in a twilight state now so he hears us but isn't really aware of what is going on (which for now is better for him). He moves the most when he hears Aidan and Riley's voices!
The best news we received this morning is that there is in fact still some hope he won't need the pacemaker!!!! They check by basically turning down or turning off the external pacemaker he has now to see how his own heart recovers and conducts on his own. It was still very low or not at all yesterday morning and into the afternoon but last night it was much better and was even better this morning!! It isn't definite but I was SO happy to get some hope that he will fully recover without the pacemaker. The thought that Blake could go from a heart with multiple major defects and a left side that essentially didn't work to a repaired heart with no defects and works fully on its own feels like a miracle. Please pray that his heart continues to strengthen and conduct on its own!
He still has his chest tubes in because once they removed his LA line there was some bleeding and additional drainage. It looks like those will come out tomorrow. He was able to "sprint" on the ventilator for two hours last night. Sprinting means they turn down the pressure that forces him to breathe but push in CO2 so his brain knows to take breaths and he did great. There was a decision made today to leave his ventilator in until tomorrow to ensure all the fluid is off his lungs and chest and to avoid an additional step down. The goal would be tomorrow he would be able to breath fully on his own. We do see him taking some breaths on his own above the ventilator now. Please pray this delicate process goes smoothly for him as it is a leap forward.
They are moving him from Pediatlyte to Pediasure so he is getting more calories and more nutrition. They are also going to start to remove him from the Morphine and lighten his sedation as they move towards removing his ventilator. He is moving more and is responsive with head nods when you ask him some questions. They describe that he is basically in a twilight state now so he hears us but isn't really aware of what is going on (which for now is better for him). He moves the most when he hears Aidan and Riley's voices!
The best news we received this morning is that there is in fact still some hope he won't need the pacemaker!!!! They check by basically turning down or turning off the external pacemaker he has now to see how his own heart recovers and conducts on his own. It was still very low or not at all yesterday morning and into the afternoon but last night it was much better and was even better this morning!! It isn't definite but I was SO happy to get some hope that he will fully recover without the pacemaker. The thought that Blake could go from a heart with multiple major defects and a left side that essentially didn't work to a repaired heart with no defects and works fully on its own feels like a miracle. Please pray that his heart continues to strengthen and conduct on its own!
Saturday, April 20, 2013
Big Day
Today is going to be a big day for Blake! After a really great and quiet night Blake's LA pressures have stayed low and his temperature has been stable. He will remain off of the paralytic and he is moving and opening his eyes. He keeps reaching for something and grabbing at his chest but they are keeping him very comfortable. The doctor told us this morning he is doing as best as we could ask for.
Last night they removed his Foley catheter and reduced a few medicines but did increase his diuretic. They are trying very hard to keep him "dry" as they work toward removing his ventilator so that his lungs don't get any fluid.
Today will be a big day! They are going to remove one of his lines and as long as there is no bleeding they will remove his chest tubes. They are also going to try to remove a line from his neck and place a PIC line in his arm. He has been started on IV nutrients but they are also going to get him a feeding tube today. Lastly, they will start to wean him from the ventilator with the hope to get it fully out by as early as tomorrow. It really is a lot but as the doctor said this morning "he is a good boy" and we know he is going to take each step and progress forward.
We also saw the surgeon and it looks like we aren't likely to avoid Blake having a pacemaker. They are going to give him through the weekend but it looks like Monday or Tuesday he will go back in for the minor surgery of inserting the pacemaker. That isn't what we had hoped for Blake's outcome but he has done so well with this major surgery that we are pleased this is the "issue" we need to resolve.
Things here in Boston seem to have quickly gone back to normal and we are very happy to be able to freely and comfortably move around the city! This week has been one that we aren't likely to ever forget!
Last night they removed his Foley catheter and reduced a few medicines but did increase his diuretic. They are trying very hard to keep him "dry" as they work toward removing his ventilator so that his lungs don't get any fluid.
Today will be a big day! They are going to remove one of his lines and as long as there is no bleeding they will remove his chest tubes. They are also going to try to remove a line from his neck and place a PIC line in his arm. He has been started on IV nutrients but they are also going to get him a feeding tube today. Lastly, they will start to wean him from the ventilator with the hope to get it fully out by as early as tomorrow. It really is a lot but as the doctor said this morning "he is a good boy" and we know he is going to take each step and progress forward.
We also saw the surgeon and it looks like we aren't likely to avoid Blake having a pacemaker. They are going to give him through the weekend but it looks like Monday or Tuesday he will go back in for the minor surgery of inserting the pacemaker. That isn't what we had hoped for Blake's outcome but he has done so well with this major surgery that we are pleased this is the "issue" we need to resolve.
Things here in Boston seem to have quickly gone back to normal and we are very happy to be able to freely and comfortably move around the city! This week has been one that we aren't likely to ever forget!
Friday, April 19, 2013
Slow & Steady
With so much craziness going on outside of these windows today it has been very calm in Blake's room. We are very thankful that the lock down has been lifted and I look forward to having Tom back at the hospital with us tomorrow morning.
They removed Blake's paralytic around lunchtime and he was able to quickly metabolize it and start moving. They were mainly jerking motions but tonight he did open his eyes to the sound of Aidan and Riley's voices over videos. I have been sitting in his room staring at his LA (left atrial) pressure for the last several hours. As the doctors removed the paralytic they warned that they expected that his LA pressure would probably go up and they would need to put them back on. But Blake has beat the odds again and his LA pressure has stayed right in the normal range. However, his temperature remains to be an issue as he is having trouble staying cool enough. Now that he is not paralyzed and less sedated he can't be on the cooling blanket as it would be very uncomfortable and could cause him to shiver which would only increase his temperature. That means if they can't keep his temperature down they may have to put him back on the paralytic so he can go back on the cooling blanket to ensure they can keep him cool enough so his heart doesn't need to work as hard. This is a very delicate process right now and is a little bit of a game to get him off the paralytic and continue to reduce the sedation.
The absolute best thing that I did see today was him take some breaths on his own. After they lifted the paralytic they turned down the ventilator slightly and he was taking some shallow breaths on his own.
His nurse tonight is amazing and has spent the last 1 1/2 hours with his room dimly lit cleaning him up, getting him new cool wash cloths, straightening and organizing every tube and ensuring he has a calm and organized environment. I think it might be the perfect thing to ensure that Blake has another quiet night and keeps his temperature down.
They removed Blake's paralytic around lunchtime and he was able to quickly metabolize it and start moving. They were mainly jerking motions but tonight he did open his eyes to the sound of Aidan and Riley's voices over videos. I have been sitting in his room staring at his LA (left atrial) pressure for the last several hours. As the doctors removed the paralytic they warned that they expected that his LA pressure would probably go up and they would need to put them back on. But Blake has beat the odds again and his LA pressure has stayed right in the normal range. However, his temperature remains to be an issue as he is having trouble staying cool enough. Now that he is not paralyzed and less sedated he can't be on the cooling blanket as it would be very uncomfortable and could cause him to shiver which would only increase his temperature. That means if they can't keep his temperature down they may have to put him back on the paralytic so he can go back on the cooling blanket to ensure they can keep him cool enough so his heart doesn't need to work as hard. This is a very delicate process right now and is a little bit of a game to get him off the paralytic and continue to reduce the sedation.
The absolute best thing that I did see today was him take some breaths on his own. After they lifted the paralytic they turned down the ventilator slightly and he was taking some shallow breaths on his own.
His nurse tonight is amazing and has spent the last 1 1/2 hours with his room dimly lit cleaning him up, getting him new cool wash cloths, straightening and organizing every tube and ensuring he has a calm and organized environment. I think it might be the perfect thing to ensure that Blake has another quiet night and keeps his temperature down.
Inching Forward
We are safe and locked down like the rest of Boston. I am at the hospital with Blake but Tom is at our hotel about a mile and a half away. We are praying for all of the law enforcement involved and praying this ends soon so Tom can be with us. It is very quiet and somewhat tense here today but they are still laser focused on taking amazing care of Blake.
Blake had a quiet night which is always good news. They are going to begin to lift his paralytic today and see how he does. This will be a big step for Blake as he has shown that when his sedation starts to lighten up he becomes agitated and his blood pressure goes up as well as another pressure indicator (basically how hard the bottom of his heart squeezes) which they don't want. The plan is to slowly lift his paralytic and see how he does...if he does okay they will pull it all the way off but if his pressures go up they will put him back on and let his heart take more time to get used to the new flow. Once the paralytic is successfully lifted they will begin to decrease the sedation and the ventilator. The rest of the day will be inching toward big steps for him.
They have also begun to move him away from narcotic sedation and to IV Motrin as a pain reliever. The hope is that this will also regulate his temperature. They have removed the cooling blanket as he has shown the he quickly goes from normal to really cold and then back up using the blanket.
Overall today I just want all my family to be safe! I want to be able to hug each of my kids and my husband. Please pray for Boston. Please pray Tom gets to be with us today. Please pray that Blake does well off the paralytic. Please pray for Aidan and Riley. Thank you for your continued love and support!
Blake had a quiet night which is always good news. They are going to begin to lift his paralytic today and see how he does. This will be a big step for Blake as he has shown that when his sedation starts to lighten up he becomes agitated and his blood pressure goes up as well as another pressure indicator (basically how hard the bottom of his heart squeezes) which they don't want. The plan is to slowly lift his paralytic and see how he does...if he does okay they will pull it all the way off but if his pressures go up they will put him back on and let his heart take more time to get used to the new flow. Once the paralytic is successfully lifted they will begin to decrease the sedation and the ventilator. The rest of the day will be inching toward big steps for him.
They have also begun to move him away from narcotic sedation and to IV Motrin as a pain reliever. The hope is that this will also regulate his temperature. They have removed the cooling blanket as he has shown the he quickly goes from normal to really cold and then back up using the blanket.
Overall today I just want all my family to be safe! I want to be able to hug each of my kids and my husband. Please pray for Boston. Please pray Tom gets to be with us today. Please pray that Blake does well off the paralytic. Please pray for Aidan and Riley. Thank you for your continued love and support!
Thursday, April 18, 2013
48 Hours
We have officially passed another big milestone for Blake....we are 48 hours post surgery and he continues to do really well. We just saw Dr. del Nido (Blake's surgeon) and he felt Blake had really turned a corner. Tomorrow they are going to try to take him off the paralytic (muscle relaxers) and allow him to move. They will slowly try to take him off the sedation and the ventilator which is a REALLY big step as it can often take kids 5-7 days for them to try that for the first time. Our Superman Blakey Bear is going to get his first try in just 3. There is a 50/50 chance whether the left side of his heart will be prepared (that side of his heart has had the most impact from the surgery because it essentially wasn't doing any work until now) and he will tolerate it.
In other good news, he is showing some signs that his heart is doing some conduction on its own underneath the pace maker. It isn't a lot right now but it gives some hope that he won't need the pace maker later.
They are having some issues keeping his temperature down but they have him on a cooling blanket to try to keep it regulated. He isn't actually running a fever but they like to keep him on the cooler side so his heart doesn't have to work as hard and keeps his blood pressure lower. This will be very important as they release the paralytic and sedation tomorrow.
Thank you for all the love, support, good energy, positive vibes and prayers! Please keep them coming because they are obviously working!
We have been able to speak to Aidan & Riley each day over FaceTime which has been a treat for all of us. It is definitely a strange feeling for our family to be separated but we are SO thankful for Tom's amazing sister Sheila and the love and care she is giving to them while they remain in New York during this critical time for Blake.
In other good news, he is showing some signs that his heart is doing some conduction on its own underneath the pace maker. It isn't a lot right now but it gives some hope that he won't need the pace maker later.
They are having some issues keeping his temperature down but they have him on a cooling blanket to try to keep it regulated. He isn't actually running a fever but they like to keep him on the cooler side so his heart doesn't have to work as hard and keeps his blood pressure lower. This will be very important as they release the paralytic and sedation tomorrow.
Thank you for all the love, support, good energy, positive vibes and prayers! Please keep them coming because they are obviously working!
We have been able to speak to Aidan & Riley each day over FaceTime which has been a treat for all of us. It is definitely a strange feeling for our family to be separated but we are SO thankful for Tom's amazing sister Sheila and the love and care she is giving to them while they remain in New York during this critical time for Blake.
A BIG step forward
Today has been a very active day! Blake continues to do great and is exceeding all expectations. Unfortunately, we didn't get to spend much of the morning with him as I started with a tons of pain in my ear yesterday and it was clear this morning that something was wrong. Two urgent treatments later and I am on medicine for a "raging" ear infection. My goal is to spend today getting better so as Blake starts to wake up over the next days I can be 100% for him.
While we were away this morning they were able to close his chest which is a BIG step forward. He did great...there is always a chance that his heart won't react well or that his blood pressure would drop but he none of that happened and he is again resting comfortably. His goals for the next 24-48 hours are to remove the paralytic and start to release the sedation. Once that happens they will discuss timing to remove his respirator. We are very eager to see those big blue eyes!
Outside Blake's window is tons of activity that he would love. We are directly across from Brigham-Woman's Hospital and President Obama is on his way to visit. We are on the 8th floor and have a very clear view of the secret service and the snipers on top of the hospital.
We are so proud of Blake and how well he has done. They continue to closely follow his white blood cell count, temperature, blood pressure and heart rate. They have tried to remove him from the pace maker and his heart has not yet picked up so he is still using the pace maker to pace his heart. However, it can take up to 7 days for his heart to provide the right conduction so we are hopeful that over the next 5 days he will be able to do that. Please pray that it will!
While we were away this morning they were able to close his chest which is a BIG step forward. He did great...there is always a chance that his heart won't react well or that his blood pressure would drop but he none of that happened and he is again resting comfortably. His goals for the next 24-48 hours are to remove the paralytic and start to release the sedation. Once that happens they will discuss timing to remove his respirator. We are very eager to see those big blue eyes!
Outside Blake's window is tons of activity that he would love. We are directly across from Brigham-Woman's Hospital and President Obama is on his way to visit. We are on the 8th floor and have a very clear view of the secret service and the snipers on top of the hospital.
We are so proud of Blake and how well he has done. They continue to closely follow his white blood cell count, temperature, blood pressure and heart rate. They have tried to remove him from the pace maker and his heart has not yet picked up so he is still using the pace maker to pace his heart. However, it can take up to 7 days for his heart to provide the right conduction so we are hopeful that over the next 5 days he will be able to do that. Please pray that it will!
Wednesday, April 17, 2013
Quiet Day
Not much to report as we head into the evening which is a good thing! Blake has been resting comfortably under sedation all day and there have been no surprises. His chest is still open and they are waiting for some swelling to go down overnight so they can close him up tomorrow.
Each nurse and doctor that has come in contact with Blake has reported how well he is doing. Everyone is shocked with how long and involved the surgery was and then how little intervention he has needed following that. We have crossed the 24 hour mark and he has proven that he is a fighter!
Our goals for Blake remain to get his chest closed, get him off the respirator and off sedation and eventually understand his path for whether he will need a permanent pace maker or not.
Everyone here is still talking about the events that took place on Monday and there is a large police presence everywhere. Despite the continued threats/scares in the city we feel very safe in the hospital and the surrounding area. We are so thankful for all of the staff at Boston Children's Hospital and the amazing care that they have given Blake over the last two days.
Each nurse and doctor that has come in contact with Blake has reported how well he is doing. Everyone is shocked with how long and involved the surgery was and then how little intervention he has needed following that. We have crossed the 24 hour mark and he has proven that he is a fighter!
Our goals for Blake remain to get his chest closed, get him off the respirator and off sedation and eventually understand his path for whether he will need a permanent pace maker or not.
Everyone here is still talking about the events that took place on Monday and there is a large police presence everywhere. Despite the continued threats/scares in the city we feel very safe in the hospital and the surrounding area. We are so thankful for all of the staff at Boston Children's Hospital and the amazing care that they have given Blake over the last two days.
A Wonderful Night
Good morning! According to all of Blake's nurses and doctors he had a Wonderful night! They are telling us that they could not have asked for anything better. He is still fully sedated, on the respirator, on the pacer (the external pace maker) and his chest is still open so today his job is just to rest and get the fluid off his body. He looks great with pink toes and pink lips which we have never seen on Blake before.
The surgeon visited this morning and it looks like they will close his chest either tonight or tomorrow which will be a great step forward.
Aidan and Riley are at home in their regular routine but definitely missing their Blakey Bear! Please keep them in your prayers as we focus on Blake and his recovery!
The surgeon visited this morning and it looks like they will close his chest either tonight or tomorrow which will be a great step forward.
Aidan and Riley are at home in their regular routine but definitely missing their Blakey Bear! Please keep them in your prayers as we focus on Blake and his recovery!
Tuesday, April 16, 2013
He did GREAT!
It has been 12+ hours since Blake went back to surgery but he is finally up in the ICU. We still haven't been able to see him but we have met with the surgeon who said that Blake did great. The surgery took longer than expected and a few revisions were needed as they tried to take Blake off of the heart and lung machine but (like we all knew) Dr. del Nido said that Blake was a strong little boy!
He now has a long road of recovery ahead. Based on the anatomy of his heart and the work that was required to repair his heart he may need a pace maker. Right now he has one that is temporary and over the next week they will try to take him off to see if his heart can pace itself. Please pray that it will. His chest is also still open as they allow him to recover and want to ensure he continues to do as well as he did today. Please pray the next 24 hours will go well and they can close his chest.
Today was a huge hurdle for Blake and we feel so blessed and proud of him! Hopefully soon we will be able to go back and I can't wait to be by his side so no more updates tonight but more to come tomorrow. Thank you for your continued love and prayers for our family.
Still going
Blake is still in surgery and is doing well. They believe they have been able to do a successful repair but now is a very critical time....they will do lots of testing and get him off the heart-lung machine. Please continue to pray for Blake over the next few hours as they complete the surgery. I will do one last update when they get him settled into ICU this evening!
Superman is in surgery
Blake is officially in surgery! He went back about an hour ago wearing his favorite superman shirt, complete with a cape. Looking forward to updating later that he is out and doing great. Thank you for all the prayers today!
Monday, April 15, 2013
Prayers for Boston
First,our prayers are with all of those that were injured or affected by the tragedy today!!! This is all really unthinkable and has been a very emotional day for us.
We are safe and sound. Thankfully we had planned on spending the day with Aidan and Riley so we were still in NY when the events unfolded. We couldn't get into Boston but we are settled in a hotel outside the city and will make our way in the best we can in the morning. As we understand it right now, his surgery is still on for the morning.
Tuesday, April 9, 2013
Day 1
Hello! Welcome to Two Perfect Hearts! This blog was created to journey through our last step in beating Congenital Heart Defects!!!
Most of you have been on this journey with us for the last 4 years and we appreciate all of the love, support and prayers! To be honest, there hasn't been a time where we need that more than now. Blake is a fighter and he is going to do great but this surgery is going to be a tough recovery on him.
Going into today, our plan was to spend the next two weeks preparing for open heart surgery (Biventricular Repair) which was scheduled for April 22nd. Today we received a call that his surgery was moved up to Tuesday, April 16th and we will need to head up for his pre-op Friday morning at 7:30am. The Boston Marathon is Monday so like the rest of Boston, the hospital doesn't do much that day. We truly believe that it is Blake's time for surgery and we are pleased to get him there while he has some strength left but I would be lying if I said my nerves weren't rattled a little today. We are blessed to have an amazing team of doctors...many would say the best in the world....so I keep kissing the kids, reminding myself how blessed we are and then saying little prayers which makes me feel better (and making to-do lists).
A big thank you to those that helped get us hotels for our stay in Boston!! That isn't an easy task the week of the Boston Marathon! :)
My goal is to write updates in the evenings following the surgery to let you know how Blake is doing. It is anticipated that he will be in ICU for 7+ days after the surgery which means my connection will be limited so please forgive me if I miss calls, texts or emails!
Lastly, as much as we would like to share this journey with you please don't post this link to Facebook or other social media sites (basically ignore all those buttons below this). We believe in the power of prayer and want as many of those as we can get for Blake but we do try to keep our children's lives somewhat private. It is all about balance for us right now...thanks!!
Most of you have been on this journey with us for the last 4 years and we appreciate all of the love, support and prayers! To be honest, there hasn't been a time where we need that more than now. Blake is a fighter and he is going to do great but this surgery is going to be a tough recovery on him.
Going into today, our plan was to spend the next two weeks preparing for open heart surgery (Biventricular Repair) which was scheduled for April 22nd. Today we received a call that his surgery was moved up to Tuesday, April 16th and we will need to head up for his pre-op Friday morning at 7:30am. The Boston Marathon is Monday so like the rest of Boston, the hospital doesn't do much that day. We truly believe that it is Blake's time for surgery and we are pleased to get him there while he has some strength left but I would be lying if I said my nerves weren't rattled a little today. We are blessed to have an amazing team of doctors...many would say the best in the world....so I keep kissing the kids, reminding myself how blessed we are and then saying little prayers which makes me feel better (and making to-do lists).
A big thank you to those that helped get us hotels for our stay in Boston!! That isn't an easy task the week of the Boston Marathon! :)
My goal is to write updates in the evenings following the surgery to let you know how Blake is doing. It is anticipated that he will be in ICU for 7+ days after the surgery which means my connection will be limited so please forgive me if I miss calls, texts or emails!
Lastly, as much as we would like to share this journey with you please don't post this link to Facebook or other social media sites (basically ignore all those buttons below this). We believe in the power of prayer and want as many of those as we can get for Blake but we do try to keep our children's lives somewhat private. It is all about balance for us right now...thanks!!
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